My two hands dwarfed the white porcelain hotel cup. I took a sip. It was piping hot, but watered-down. I opened and closed the green folder in front of me. I wrote down “BIAPA June, 25th 2012” in the notebook I had left untouched for this special occasion. I scanned the room full of people and tables and chairs and wheelchairs and TBI swag. I really had to pee. It was three days before my 30th birthday and I still got nervous pee, which is what select members of my family and I call that uncomfortable I-have-to-go sensation that comes on right before a big event like riding my pony; the first waterski of the season; teaching my first twenty or so yoga classes; walking down an isle as someone’s bridesmaid; and now this.
“I really can’t believe I’m here,” I texted my mother.
“How is it?” she asked.
“I dunno. It’s too weird.”
“It’s good you’re there.”
A tear rolled down my cheek. This is too much, I thought. Why on earth am I here? I mean seriously, “How in the hell did my life come to this?” Oops, I said that out loud. Two people came and sat down at my table. They were nice, younger women, what you might call clinicians. One of them asked if I knew anything about CEU credits. I didn’t. I didn’t know a damn thing about any of this. I kept up the conversation as our round table filled up with people and breakfast plates and folders and coffee cups and one wheelchair. All I wanted to do was cry. Just sob, right there in the conference room of the Lancaster Marriott in front of hundreds. I knew no one—not one stinking soul at this conference. I was alone. I could bolt. Lancaster was nice, right? I could walk around downtown. Find better coffee. Text some guy. I felt the buzz of my mom’s new text in the pocket of my skirt. It was a great skirt—it had pockets. I had a great outfit. I had that. Another tear escaped. Ugh, I wiped it away. I hope my new breakfast table friends didn’t see that.
After the keynote and before the first round of presentations, I found a spacious handicapped bathroom stall. I cried. I cried because I was there on scholarship. I cried because it was a brain injury conference. I cried because my dad had a brain injury. I cried because he had a really crappy, terrible, life-changing brain injury. I cried because I missed the past, and I couldn’t even begin to imagine what this future would be. I sat down on the toilet and cried. Before I left the bathroom stall, I pulled out a compact with a tiny mirror, cleaned my mascara off with spit and some toilet paper, and put on a fresh coat. I stood up and opened the door. A woman was washing her hands at the sink. I looked at myself in the mirror, ran my fingers through my hair, and said something pleasant to the woman before leaving.
That was the first professional conference I attended for intensely personal reasons. I had applied for a scholarship to the 2012 BIAPA conference and got it. I was the daughter of a survivor and 2012 was supposed to be the year of big changes and writing books and owning it.
Brain injury conferences, panel discussions, groups, meetings, luncheons, and seminars are like flying to me. As a teenager, I would keep track of the number of flights I’d taken. Now I just fly. Now I just show up when there’s an opportunity to share my experience of living with my father’s brain injury. This sharing adventure—for lack of something better to call it—began with my wanting to read a story about a girl who had a dad with a TBI—or a kid with a TBI parent, at least. There was no such material. In fact, when my dad had his severe, frontal lobe, diffuse axonal brain injury in 1996, the world was still saying “head injury” and no one but Cathy Crimmins (Where is the Mango Princess) was telling the kind of TBI story I was interested in hearing. Time passed, and I never found the book I wanted to read, so I wrote it in 2012.
The birth of He Never Liked Cake threw me headfirst into learning everything I could about brain injury. As my repertoire of knowledge grew, so did my tiny circle of TBI friends, most of which I only shared a connection with via Facebook or email, but all of which were in full support of me sharing my story with others. I was finally meeting people who share a similar load of challenges. I was relating, and oh-my-goodness did it feel awesome. Opening up was scary, but the nights Eduardo and I shared in Brooklyn bars filled with tears and beers and stories about our dads are priceless. My email threads with Mark Palmer have kept me afloat. The conferences I’ve attended and the people I have connected with have reminded me of how much good you can find in this TBI world. Enough goodness to share with my mom, to fuel my career, and to help my father.
It occurred to me the other day, during a conversation with my best friend who dips her toes in the world of TBI as a speech pathologist, that the very thing that makes living with my father’s brain injury and its boatload of strife over the last 18 years easier is meeting other people with brain injuries. In a curious fashion, her speech pathology career and my yoga and writing career often cross paths in the world of TBI. We revel in sharing stories of success. We challenge ourselves to figure out how to beat the odds. We do this for people we hardly know, and although the triumphs are usually anonymous, they are always universal. And sometimes, when we kick back and hang out as great friends do, we look at each other and laugh. How did we end up here? I still don’t know, but I’m not leaving.
I might not always have the energy to help my family, my situation, or myself but it’s as though I’ve been armed with energy enough to help others. I can teach yoga to help alleviate the negatives that come with TBI. I can share my story at these conferences, panel discussions, group meetings, luncheons, and seminars. I can speak up, reach out, and meet the thousands of other people in my boat. I know there will always be days when I cry my face off because of what happened to my dad, but I have learned that the best remedy for the unfairness is meeting the daughters and sons and wives and brothers and friends of others who have been where I have been. And on the really hard days, when I know that nothing I am doing seems to be helping my father or making it any easier for my mother, I remember that I can do something to help someone else with a brain injury. That is something, especially when you feel like there is nothing.